Insights & Impressions from the consultation with the EWGPWD in Bologna, October 2025

Prior to the 35Th Alzheimer Europe Conference in Bologna in October 2025, the DCs had an opportunity to have a consultation with the members of European Working Group of People With Dementia (EWGPWD) about their research projects. Here are impressions shared by some of the DCs after the consultations:

Marine Markaryan, Maastricht University, Netherlands:

“In my PhD, I am developing an intervention rooted in Acceptance and Commitment Therapy (ACT)  for couples in which one partner has been diagnosed with dementia. During a consultation with the EWGPWD 🤝, I presented the intervention at a very early stage of development and received valuable input on missing elements as well as potential barriers to future implementation. A key take-home message from this session was the strong need for support programmes that involve both the person with dementia and their partner 💞. As always, I left the meeting with concrete insights to further shape my work, as well as renewed motivation to continue developing an intervention that clearly resonates with the people it is intended to support 🌱✨”

Rising Lai, LUCA School of Arts, Belgium:

“During my session with the European Working Group, I read a scenario script 📖 for a co-design workshop focused on deciding what to eat at home 🍽️🏡. The members helped me improve the wording ✍️, voiced their agreement or disagreement 💬, and shared their thoughts on how they wanted to be represented in the material. They were passionate and checked my work line by line 🔍. I truly appreciate their insights 🙏, and I believe that after this session, the material is much more compelling and will make the workshop I am preparing more realistic and effective 🌱🎯.”

Andrea Nakakawa, Politecnico di Milano, Italy:

“As part of my work with the EWGPWD , my goal was to test an activity  from my case study research 📚, gather the group’s impressions , and discuss a real example  of a policy intended for implementation in home-care services 🏡. I presented an extract 📄 from a policy document describing the vision of supporting people receiving care to become “active co-creators” of their care. Together, we explored what this concept means in practice and what it requires from individuals and services.

This session provided very valuable insights 🌟 that complement what I had heard in my fieldwork, helped me validate the relevance of my research ✅, refine how I frame key challenges, and use the input for an activity that I will later use in workshops in Sweden”

Ajda Flisar, KU Leuven, Belgium:

“During the meeting with EWGPWD I held a group discussion 💬 on the topic of sleep related changes in dementia 😴. My goal was to better understand 🔍 how important people living with dementia (PwD) find their sleep 💤 and whether they experience any problems with sleep. The session had an open-format and was flexible in terms of the questions we covered. I was curious about the subjective quality of their sleep 🛌, sleep changes before and after the diagnosis ⏳, their coping strategies with sleep changes, the effect of PwD’s sleep on their caregiver, and their suggestions for researchers when investigating the topic of sleep in dementia. During the conversation, PwD were very open about sharing their experiences and shared their history with sleep problems. By having a discussion with the group of experts by experience I was able to benefit from being reminded of whether my research goals are in line with what people with dementia experience and find important”